Sunday, August 29, 2010

Super New York Times article about Dr. Harvey Cushing's collection of brains in jars, now housed in the Cushing Center at Yale. Homage to him as father of modern neurosurgery. Center has visiting hours! Be sure to check out the slide show:

Dr. Harvey Cushing, one of America's first neurosurgeons, kept extensive samples of his work, but many of the details have been lost. The brains and photos that are on exhibit at the Cushing Center at Yale University are believed to have been made as part of the patients' medical records. The collection includes photos taken of patients before and after operations, tumor specimens, and microscope images. In total, there are almost 10,000 glass plate negatives of patients treated by Dr. Harvey Cushing between 1902 and 1933.

NEW HAVEN — Two floors below the main level of Yale’s medical school library is a room full of brains. No, not the students. These brains, more than 500 of them, are in glass jars. They are part of an extraordinary collection that might never have come to light if not for a curious medical student and an encouraging and persistent doctor.

The cancerous brains were collected by Dr. Harvey Cushing, who was one of America’s first neurosurgeons. They were donated to Yale on his death in 1939 — along with meticulous medical records, before-and-after photographs of patients, and anatomical illustrations. (Dr. Cushing was also an accomplished artist.) His belongings, a treasure trove of medical history, became a jumble of cracked jars and dusty records shoved in various crannies at the hospital and medical school.

Until now. In June 2010, after a colossal effort to clean and organize the material — 500 of 650 jars have been restored — the brains found their final resting place behind glass cases around the perimeter of the Cushing Center, a room designed solely for them.

These chunks of brains floating in formaldehyde bring to life a dramatic chapter in American medical history. They exemplify the rise of neurosurgery and the evolution of 20th-century American medicine — from a slipshod trial-and-error trade to a prominent, highly organized profession.

These patients had operations during the early days of brain surgery, when doctors had no imaging tools to locate a tumor or proper lighting to illuminate the surgical field; when anesthesia was rudimentary and sometimes not used at all; when antibiotics did not exist to fend off potential infections. Some patients survived the procedure — more often if Dr. Cushing was by their side.

Most of the jars contain a single brain; a few hold slices of brains from several patients. Some postoperative photographs next to the jars show patients with tumors bulging from their heads. When Dr. Cushing could not remove a tumor, he would remove a piece of the skull so the tumor would grow outward rather than compress the brain. It was not a cure, but it relieved the patient of many symptoms.

Dr. Cushing, born in Cleveland in 1869, was an undergraduate at Yale and finished his career here as a professor of history of medicine. In between, he went to Harvard for medical school, did his early surgical training at Johns Hopkins and became a surgical professor there, and then spent most of his career as chief of neurosurgery, a new specialty, at Peter Bent Brigham Hospital at Harvard (now Brigham and Women’s).

When he began operating in the late 19th century, a few other doctors were also venturing into the brain, but for the most part the patients did not survive the procedure.

“In the first decade of the 20th century, Harvey Cushing became the father of effective neurosurgery,” the medical historian Michael Bliss wrote in “Harvey Cushing: A Life in Surgery” (Oxford, 2005). “Ineffective neurosurgery had many fathers.

“Cushing became the first surgeon in history who could open what he referred to as ‘the closed box’ of the skull of living patients with a reasonable certainty that his operations would do more good than harm.”

Sometimes doctors went into the brain and could not find the tumor. Sometimes they talked to patients during surgery. Dr. Cushing, for one, often used only the local anesthetic Novocain. (The brain itself does not have pain receptors, but having one’s skull cut open must have been agonizing.) Mr. Bliss writes that in 1910, midway through a 10-hour operation on the renowned physician and Army Gen. Leonard Wood, Cushing wanted to stop operating and continue another day, but General Wood — fully alert — begged him to continue.

Dr. Dennis Spencer, the chairman of neurosurgery at Yale and the Harvey and Kate Cushing professor of neurosurgery, said Dr. Cushing’s major accomplishment was “his meticulous operative technique.”

“Whatever approach he was going to use to get to a tumor,” Dr. Spencer said, “he had this incredibly good judgment in terms of where the tumor was, getting there without harming the brain and then getting out.”

Brain surgeons in those days were medical sleuths, relying largely on patients’ accounts of their symptoms to figure out where the tumor was. Dr. Cushing popularized an eye exam that took advantage of the specific ways in which different tumors can distort vision — a strategy used into the 1970s, when M.R.I.’s and other imaging tools replaced it. Even today, many tumors in the pituitary gland, which straddles the optic nerves, are initially detected because patients have trouble seeing.

Dr. Cushing also discovered that pituitary tumors could lead to vast changes in the body. Cushing’s disease and Cushing’s syndrome — two illnesses linked to hormones gone awry — are named for his discoveries.

Indeed, comparatively little progress has been made since Dr. Cushing’s time in actually prolonging life in brain-cancer patients. “It is fascinating how far we’ve come in terms of technology but not really in terms of progress for most malignancies,” Dr. Spencer said. “Everything we’ve done in the last 100 years has changed the progress for malignant brain tumors very little, extending life maybe eight months to two years.”

He added, though, that “in many tumors we are getting closer to the genetic understanding, and I’m optimistic in the next 10 years we will make a lot more progress.”

In addition to his medical achievements, Dr. Cushing won a Pulitzer Prize in 1928 for his biography of his mentor, Dr. William Osler. He devoted his life to his work, leaving little time to his five children. His three daughters gained notoriety for their marriages — one to James Roosevelt, a son of President Franklin D. Roosevelt, whom she divorced, later marrying the publishing plutocrat John Hay Whitney; one to William Vincent Astor, heir to a $200 million fortune, whom she divorced, later marrying the painter James Whitney Fosburgh; and the youngest to the Standard Oil heir Stanley Mortimer Jr., whom she divorced, later marrying the CBS founder William S. Paley.

The collection expanded while he moved from Johns Hopkins to Harvard and eventually Yale, where they ended up in dusty storage bins before their recent $1.4 million restoration, partly paid for by money from a former patient’s family. The brains and their records were a “complete mess,” recalled Dr. Gil Solitaire, a professor of neuropathology at Yale in the 1960s who once shared an office with some of the Cushing paraphernalia. “Some were totally dehydrated, and the jars were cracked.”

In 1979, the specimens were moved from the bowels of the hospital to the basement of the medical school’s dorms. It was there that the students in the 1990s started a Brain Society — with membership extended to anyone who had the nerve to sneak into the dank basement, walk through the cluttered hall of brains and sign a poster, which now hangs in the Cushing Center.

“It was a rite of passage,” said Dr. Tara Bruce, now an obstetrician-gynecologist in Houston, who became a society member during her first year of medical school in 1994. “Everyone went to see the brains. It was surreal. I had just got to Yale and I remember thinking, ‘I guess Yale has so much great stuff that they can just shove a bunch of brains in the basement.’ ”

Dr. Christopher J. Wahl, an assistant professor of orthopedics and sports medicine at the University of Washington, wrote his thesis about the brains when he was a Yale medical student, stirring an interest in the restoration.
“The most incredible thing is that it’s not just the physical documentation of the founding days of neurosurgery but a social document,” Dr. Wahl said. “The bravery of these patients that really had nowhere to turn and this guy who was — cowboy is the wrong word, but an incredible innovator who was doing things at the right time and place.”

The Cushing collection in the Cushing/Whitney Medical Library at Yale University at 333 Cedar Street, New Haven, is open to the public Monday through Friday, 8 a.m. to 8 p.m.; Saturday, 10 a.m. to 8 p.m.; and Sunday, 9:30 a.m. to 8 p.m. (203) 785-5352.

Sunday, August 8, 2010

For the regular readers of this blog, you know that I may be more bothered by my languishing mental acuity than changes to my body. As my previous two posts show, my body has faced significant changes. Truthfully, I am bothered by both, rightly so.

I want to share a medical article Susan posted today. She is an active member of the message boards. We frequently share peer-reviewed medical literature, always in an attempt to understand our disease better. These "Cushies" know more about Cushing's than many, MANY endocrinologists.

I encourage you to click through and read the article below. I will excerpt a few passages here.

Increasingly, patients with pituitary disease are evaluated and treated at cancer centers. In many ways, these patients resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis. The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.

CASE SERIES

Case 4 (BLOGGER NOTE: This is totally me! I moved it to the top spot because this is a "cushie.")
Ms. D is a 36-year-old married Anglo woman, employed as a nurse, diagnosed with an ACTH-producing pituitary microadenoma in 1992. She was treated surgically following a brief period of hormone deficiency. At the time of her psychiatric assessment, however, she had regained full hormonal function. Ms. D reported that since regaining her hormonal function she noticed some "dragginess." She reported there were times when she did not feel very motivated, and she thought that it took much more energy for her to do her normal activities. She reported that when she would take pseudoephedrine for sinus problems, she would see things "with more clarity" and that she would be able to be more focused in her attention and her ability to complete her tasks. Otherwise she tended to procrastinate and get distracted from various tasks.

Case 1
Mr. A is a 48 year-old Anglo lawyer and architect, diagnosed with a pituitary adenoma (clinically nonfunctioning) and treated with a transsphenoidal resection in 1997. He first noted memory problems in 1991 that worsened over the years, causing problems such as concentration and focused attention. He reported problems such as getting lost in familiar places and forgetting the names of people he had known for many years. He believed his thinking process was slow and he was "not as quick on the uptake" as before. He reported that he had an excellent memory, never having to use a reminder book of any kind prior to these symptoms.

Case 2
Ms. B is a 55-year-old Anglo homemaker with a history of a prolactinoma, diagnosed 15 years before her psychiatric evaluation. She reported that her symptoms of the tumor were primarily mood swings, headache, and loss of menstrual periods. She underwent surgery followed by radiation therapy, ultimately developing panhypopituitarism. Since then, she has been managed on hormone replacement, but she began to notice short-term memory difficulties. She reported difficulty finding the right words to express her thoughts. She also noticed difficulty in concentration and focused attention. She reported occasional fatigue and depressed feelings. She reported intermittent suicidal thoughts when she reported the depressed mood, but no active plans of suicide were reported during those times.

Case 3
Ms C. is a 47-year-old Anglo woman, employed as a management supervisor and diagnosed with a pituitary macroadenoma (clinically nonfunctioning) in 1994. She underwent transfrontal surgical resection and did not receive any postoperative radiation treatment but did develop panhypopituitarism. Since 1996, several changes in her behavior and personality were noted. Prior to the tumor she was a very active person. She was able to do very well at work and maintain a leadership position. She could do multiple tasks at once and received a lot of satisfaction from her work. However, after her surgery and recovery, she noticed that she was no longer able to multitask. She was deriving less satisfaction from her work and experienced transient periods of sadness. However, she was most concerned about her lack of energy and motivation. When she was able to work, she had to organize her activities very thoroughly and continuously write down everything in order not to forget what her tasks were. It took a lot of mental energy to function, and after work she would often need to take a 2-hour nap when she returned home. She showed no motivation to adequately take care of her home, including normal household chores. She reported she was not able to muster up much enthusiasm to interact with her grandchild because she was concerned about her energy and drive.

Some days, I don't care. I am going to do something fun. When I saw this hippo in a small Texas town, I knew the hippo people put those steps there for a reason. I tell you what... I've never felt skinnier!

Saturday, August 7, 2010

Hi there. Soooo much has happened, and I am really late getting all of it posted here. In the meantime, I found something I wrote back in 2007 on the Cushing's message boards. Sadly, I feel the same way today. Maybe soon, I'll start to feel better.

It is difficult to see your body change when you are doing nothing to provoke it.
It is difficult to see your body betray you.
It is difficult to admit that your body is no longer your own.

So, while I'm getting my ducks in a row to update and share lots of good Cushing's info, maybe you can tell me more about YOU. Who are you, and why do you follow me on this blog?

I would love to have some guest moxie posters. Email me at moxiemelissa at symbol gmail.com, and tell me your story. I would love to post it here to share with others. If that is okay, please be sure to let me know in your email.

Total Pageviews

Discovery Health's Mystery Diagnosis

When illness strikes, we look to doctors for answers. What if they can't help? For these unlucky patients, diagnosis is a mystery.

Old and New Me

In 2014, i'm reversing my cortisol in search of my old self

Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

In Memorium: Those We Lost to Cushing's (hyperlinks take you to obituaries)

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

Looking for something? (under construction)

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.1) Do 24 hour UFCs with 17-OHS.2) Get cortisol blood draws at midnight and again 30 minutes later.3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

Cushing's Awareness Challenge

What Doctors Will Claim You Have Instead of Cushing's:

Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)

Back and muscle pain

Diabetes

Blurred vision, visual field loss, double vision

Chronic fatigue syndrome

Dry, oily, or sweaty skin

Impotence or infertility

Joint pain, joint/bone abnormalities

Migraines

Muscle weakness, carpal tunnel syndrome

Temporomandibular joint/TMJ/jaw joint pain

Thyroid imbalance or "slow metabolism"

Spreading Awareness to the Health Community

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.

We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.

This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.

DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.